Blogger Max shares his experiences of care at St Catherine’s Hospice
A dad battling incurable bowel cancer is sharing his experiences of living with the condition and how St Catherine’s Hospice is helping him through the pages of an inspiring blog which is being read by people across Lancashire and around the country.
Max Neill has been a keen blog writer for a number of years – sharing insights and expertise often linked to his role as a learning disabilities nurse and his experiences of the health and social sector.
But since being diagnosed with bowel cancer in September 2014, his postings have taken on a more personal approach, as he shares his thoughts, feelings and experiences of the condition and how it has changed his life.
Then just after Christmas 2015 he shared a write-up about the time he spent at St Catherine’s Hospice over the festive season – and was overwhelmed with the response he received.
Max, from Broadgate, Preston, said: “First of all I noticed that the numbers of people reading the blogposts was unprecedented, people had started getting in touch, and sharing the posts on Facebook and Twitter. The stats for hits on my blogger account spiked dramatically. St Catherine’s themselves and Blog Preston, the local microblogging site, also re-published the post and shared it on social media – helping it to reach further. It’s hard to express how the adrenaline can buzz at the sight of few dry numbers when you know these means hundreds of people are reading and sharing your writing!
“I’ve since been privileged to be contacted by people living with cancer and their relatives who have got in touch to compare notes. I know from my own experience that there’s nothing like making a connection with someone in a similar situation to make you feel less alone.”
Max, aged 49, underwent surgery soon after being diagnosed and then a course of chemotherapy. Sadly the cancer returned six months later and has now spread to his lymph nodes and his chest.
A second course of chemo did not work as hoped and although Max remains open to trying more treatment – including a third course of chemotherapy and taking part in a clinical trial at The Christie Cancer Hospital to help with future research and development – he is also realistic about the future.
Max said he was keen to use the blog to help boost people’s understanding of what a hospice does, and raise awareness of the difference the care that St Catherine’s provides can make.
Max said: “Before I went into St Catherine’s the pain was very bad. It was leaving me very anxious, panicked, and I couldn’t think about anything else. I really was feeling quite desperate and was not in a good place.
“But the experienced staff at St Catherine’s worked with me to find new medications and different ways of doing things to help get it more under control. I’m much less anxious now and am back home again with my family – the difference is I’m no longer struggling like I was. I’m in my own surroundings, feeling more comfortable, and that makes a huge difference to those around me too – even something as simple as my wife Lorraine getting a good night’s sleep.”
Max said the time he spent at St Catherine’s over Christmas had also given him the opportunity to think about his future care and to have conversations about the coming months with the people he loves.
“The days I spent at St Catherine’s also gave me important time to really sit down and think – to think about the future, to come to decisions about what’s important to me. Coming here helped me and my family to open and have those difficult conversations.
“I have to say before I came to the hospice I wasn’t as aware as I probably should have been about the services St Catherine’s provides. Certainly, when I told some of my relatives I was going in, they were shocked – they thought I was about to die. I was able to explain to them that no, I was going in to get some help managing my pain and symptoms – all with the aim of being able to enjoy a better quality of life. There’s lots of people like me who go to St Catherine’s for that and I think it’s an important message to share, in the hope that people and their families feel less scared about the thought of accessing hospice care and what it can actually mean.”
Max’s powerful, poignant and honest account of the Christmas he spent at St Catherine’s struck a chord with many readers in Lancashire and beyond – and he hopes with it, comes a greater understanding of why the person-centred approach that is the cornerstone of hospice care is so important.
Max, who is looking forward to many milestones in 2016 including his 50th birthday and his son Adam’s wedding to Giulia in the summer, said: “Obviously I have a background in nursing and have always believed that good health care can only be delivered by putting the person at the heart of everything.
“Now I’m going through it myself, that passion and belief has only got stronger. I’ve found myself in the same frustrating situations as I used to objectively work to deal with in a professional capacity, and you realise it’s not as straight forward as it all might seem.
“Then I came to St Catherine’s and I saw evidence of that person-centred care everywhere. The warmth of the place is so impressive, and everyone interacts with you in a really human way, discovering what makes you, you, and caring for that individual.”
The dad-of-four, who also has four grandchildren, said he was delighted his blog was reaching out to more people and making an impact.
“Although I’ve been interested in blogging for some years now, I didn’t post often enough or consistently enough to build up a big following. But now, suddenly, blogging for me has surged into life. It’s become something that is leading real people to take real action.
“I admit it felt risky to write about the prospect of my own death, how I intend to prepare for it. How I intend to live as well for as long as possible with the people I love before and until my death happens.
“But I decided to be as open, honest and simple in my writing as I dared. I think people who read my blog appreciated this approach. I intend to continue blogging in this vein, and I’ll certainly try to do my part in helping St Catherine’s and others with their work around end of life. If my prognosis after my last scan is correct, then I would like the experience of the last months of my own life to be genuinely useful to other people.
“I wonder whether I can do this by writing not as an expert, but as a human being.”
To read Max’s blog click here
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